Hi, I'm Dia. I was diagnosed with dermatomyositis back in early 2019, but didn't come online until now. I've read the stats and seen how rare it was, but when I came on here, it seemed like there were loads of us!
I just wondered if there were people on here with my condition too and what some your stories are. It'd be cool to talk to some of you guys about how you all found out and how long you've had DM.
Thanks! xxx
Hi Dia, I have dermatomyositis but for me it’s part of UCTD and generally mild. I use the myosotis UK forum on Facebook as well as this to keep informed as both are a very good way to share stories and get quality information due to the condition being quite rare. This is partly because my doctor doesn’t really understand it so I feel the better informed I am the better I am able to manage my condition. I was diagnosed around 2 years ago and had never heard of myosotis although it is one of the conditions associated with UCTD. I hope you are managing the condition well, and either way it’s good to know there are excellent ways to keep in touch should you need to reach out.
Wishing you all the best.
Can I ask how you got diagnosed xx
Sure! Because my myositis is focused in my legs, with less-debilitating-but-also-noticeable-suffrage in my arms and hands, it was pretty easy for others around me to see I was in a physical decline, not being able to walk properly/lift items. Personally though, it was a kind of numbness in my joints where it was attacking the most and a constant background ache that just never disappeared, to the point where I thought it was normal after so long. I also couldn't get up from the ground on my own by the end of a long, long period of being undiagnosed, or crouch, jump or even stop myself from falling over. All those reflexes were cement, not fast enough.
Because of all these symptoms, a lot of people (and me) were pretty aware of what I could and could not do. Lifting heavy stuff was just not something I had the capacity to do. Lifting unwieldy things - even if they were light - was impossible with my balance being so off. Coincidentally, however unfortunate, I moved away from home at the same time it started getting Bad, going to college three days a week and being a sedentary young adult the rest. That lack of activity made things progress a lot quicker and by the time I went home for the summer, things were...just really bad. Really bad. However, I was stubborn and wanted to go back for my second year. I also got a job for the summer, so yet again, I wasn't at home, around people who would get so worried they'd force me to go to a doctor.
My work, unlike my college, was high-paced and physically demanding. I got by and the theory my mum and I came up with is that I was gaining muscle as much as it was being destroyed. I did go to see a physiotherapist that summer, though and within two sessions, she was getting in contact with my GP, asking for a referral to a neurologist. She thought it could be a brain thing, though my knee reflexes didn't jerk when knocked (which they should - it's a ligament reflex, nothing to do with the brain. When they didn't react, she got Hella Worried).
So on, so forth - I went back to college and immediately took a downturn for the absolute worst. I fell over at least three times within two months and banged up the skin around my knees so bad it needed stitches (I didn't go to get stitches, mainly because walking anywhere at all was more of a burden than an open wound I could patch myself). I did get myself an appointment with my new GP though, after I started getting a rash around my eyes and nose. Bloods were done, we marked off a fungal infection off the list, she did some reflex tests, then happily got me a referral to the head rheumatologist at the local hospital.
My mum, who was up to date with things over skype by this point, now knowing it was probably a rheumatology thing, recalled her own aunt who had dermatomyositis, who she acted as carer for when she couldn't walk. Dermatomyositis can be inheritable and the link wasn't so far down the tree for it not to be from that side of the family, so when the rheumatologist gave a list of three things it could be, I successfully identified myositis as the cause, which the rheumatologist thought was very lovely.
Another stressful-to-get-to appointment later (because I moved home between appointments, over two hundred miles away) with more bloods, an ECG, and a consult with the physiotherapist, I got a primary diagnosis. She gave me my first prescription of steroids - and then I switched back to my former GP and got a new referral to rheumatology. I met my new doctor after three months of that, which significantly improved both my condition and my ability to walk and function day to day. He put my on a proper regime of medication and saw him every three months afterwards. I also got a muscle somethingsomething test with needles to check to see if the electrical signals were bad for confirmation of my diagnosis, plus a few other tests with different departments.
A year later, my rheumatologist gave me a physio appointment, as that time gave my immune system time to be beat back, and switched me onto immunosuppressants. I had a harder time since January when they upped my dose of azathioprine, but I'm off the steroids now and switched to mycophenolate instead, which doesn't make me feel like I'm about to throw up or starve to death at any moment.
And yeah! That's my story. It was a whole lot more stressful than it sounds, mainly because I was moving about and quit college, etcetera, but once everything was in motion, it didn't stop or stall. The development of my disease was so far on, so it was more a 'we need to do this quickly so it doesn't get worse' case.
Oh my. You have been through it. I hope you are on the mend xx
Hi Arcadia, how are you coping with Dermatomyositis? I hope you are dealing with it on a day to day basis!
I was diagnosed with this condition over 6 and half years ago. My condition is still very active.
I have been on numerous drugs to help control it in order for me to have some quality of life!
I have a severe itch from head to toe, my skin is very red, my eyes are very irritated and red, my muscles are weak. Making a bed leaves me drained of any energy.
However, like most people with these types of autoimmune disease, you pray that one day things will get back to normality.
I hope you are staying strong, you will get better!
Stay Safe 🤞
Hi, I'm in the process of changing medication, actually! Going from azathioprine to mycophenolate and off steroids completely, finally. Thanks so much for your words - what you're going thro sounds kind of awful compared to me and I hope you find something that works well for you!!! I've been exercising more lately (which /may/ have something to do with the new sword replica I got for my birthday) and it doesn't take long before I'm exhausted, but I'm glad that things are better than they were this time last year for me.
Again, thank-you xxx
Hi to Hidden, Just wondering how you are coping with Dermatomyositis?
Have you received good treatment to date?
I also have Dermatomyositis, now going over 7 years.
Still struggling, tried lots of Immune Suppressant Meds, combined with Steroids both oral and topical, but still the condition is highly active.
I hope you are doing very well.
Stay Safe x
Hi have you found anything that helped? I'm four years diagnosed when was 40 so young to get it. And it spread to my lungs I was told I was terminal it all happened so fast in the space of three months. I'm now trying to beat it but the flare ups are hard and mobility is hard. I also got holes in my body at pressure areas I had two on my shoulders two on elbows two on my back from being maybe immobile for a while but more my skin seems to just tear up really easily. My hair fell out and I'm still struggling and my skin on my face is mostly red and itchy and flaky. Trying very hard to come out the other side - have you found things that help? Good luck to you 🤞
Hi Galaxies1, so sorry to hear how this illness is affecting you! I have been on several immune suppressants, combined with steroids and other bone & skin medication. I have been on Mycophenolate Mofetil for a wee while now. My condition is still very active. I would say that Mycophenolate Mofetil is the best med for me with this disease!
I hope that you manage to sit down with a consultant and discuss the best way forward for you.
I have just recently been diagnosed with blood clots in my lungs. So, on blood thinner called Apixaban.
Please keep me posted on how things go for you.
X
thank you for your kindness. You also I hope things improve. Sounds like mycophenolate is helping a bit? At the moment I'm not being helped by any consultant. I can't get the support and care I need in the community as GP and other services are zero. They all say oh you're complex and run away. I'm hoping this goes into remission. Somehow. And keep hoping. You also take good care. 🌷
Sorry to hear that you no support going through this illness.Can I ask - "have you been diagnosed with Dermatomyositis"?
Yes, Dermatomyositis is a very complex/rare disease. That does not mean you do not deserve care! It's the total opposite. You need a consultant who you can sit down with and work out a treatment plan. Different Immune Suppressants work in different ways for each individual. As each person with this illness responds differently under each drug. You need skin medication to control the horrendous itch. So, you need to see a Dermatologist. Steroids help greatly with this illness. Your muscles are highly affected. So you need to see a Rheumatologist. Please ask your GP to refer you to these consultants.
Hear back when you have been placed under care with consultants.
Thank you. Yes diagnosed 4 years ago. Been passed around and gas lit for years. None of the consultants I've had have listened to me or my feedback on side effects of drugs or even what helps my symptoms. If you don't fit in their box they lose interest. I've also got lung fibrosis and mast cell activation. Plus a very slow healing painful wound on my back that makes life agony. Not to mention the utter horror of the daily 24/7 pain and little sleepy. Have given up trying to find a kind rheumatologist but you're right I do deserve the support. Thank you for being kind
It is sad to hear that you have not received the proper care that you are due. Dermatomyositis is a life changing disease to live with. Your life turns upside down. Dealing with it on a daily basis also affects your mental well-being. As we know, there is no cure. You need support to get you onto the right medication path and ongoing health checks to prevent things tumbling in the wrong direction. Please ask your GP to make a referral for you to see a Rheumatologist and also a Dermatologist to control the skin issues. You should not be suffering in this way. Thinking of you. X
Newbie here. 
Hi, new here, and would like some help if you could please? :)
New looking for advice pls 
